I had my first loading dose of Entyvio 2 weeks ago and since then I’ve had what feels like pouchitis. I’ve gone from 2-4 bathroom trips to over 10 with 100% watery stool, burning in anal area, painful gurgling, and the worst, night time accidents and not being able hold it during the day which has NEVER happened in 28 years. I’m beside myself with worry. ANY thoughts would be great
THANKS!
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I don’t think this is likely to be caused by the Entyvio itself, though my confidence in that opinion isn’t strong. A couple of things to consider: did you stop a previously helpful treatment? Did you have a worsening condition that may have now expressed itself fully?
In any case, I hope this improves very soon. It sounds miserable.
Hi Scott, Thank you for the quick response. I was on Remicade 7+ years ago after a very serious abcess which almost ended my life. It was "liquid gold" as my colorectal doc like to call it. I developed antibodies and stopped. I was fine as far as the new symptoms are concerned until last week. My new GI doc felt very strongly that I needed the biologic. She did a scope and saw "chronic inflammation" at the afferent limb which has been there for as long as I can remember. I did a Calprotectin with a 450 result. She put me on a 4 week regiment of Pred and the level dropped to 220. She then said it was time to start the Entyvio.
It's the rapid deterioration that has me baffled and concerned. I'll call her tomorrow to see what she thinks.
Have a great day.
Scott, I've always done well with 10 days of Cipro, but my new doc is 100% against the long-term use of antibiotics. Interestingly, my colorectal doc who has been my #1 care- giver for 28 years was very perplexed at the idea of starting Entyvio. He asked me "why Entyvio with all of the other options?" I know that he was trying to be professional and not countermand her decisions, but I know him well enough that he was not on board. He referred this new doc to me, so I was happy to have someone that he knew and trusted.
When I told her that he was "surprised", she seemed a bit offended. "Does he trust my opinion?" I said, "of course, he refered me to you". Then I backed off. I feel like I'm walking a fine line. Also, my doc is 75 so I assume that he will retire in the near future.
Was the prednisone stopped abruptly or tapered? Can you relate the timing of the prednisone cessation to the onset of symptoms?
The Pred was over 2 months ago.
Thanks!
